Commentary on Patient Participation in Clinical Ethics Support Deliberation: Perspectives from Parents and Clinicians in a Children's Hospital.

Abstract

AbstractWhether and how patients should participate in clinical ethics discussions is an important contemporary debate. Murdoch recently reported clinicians' and ethics service members' views from England and the United States on patient participation in ethics consultation. In response to the call for further understanding, we report parents' and clinicians' experiences of active parental and child involvement in ethics case reviews (ECRs), including the then-novel use of videoconference ECRs during the pandemic in a UK tertiary children's hospital. Between January 2018 and May 2023, parents attended 59 of 85 hospital ECRs and provided positive anecdotal feedback. To better understand their perspectives, we interviewed three families (two couples and one single parent) and four clinicians involved in ECRs, conducted via videoconference because of pandemic restrictions, between March and December 2020. All reviews concerned proposals for innovative COVID-19 therapies. Reflexive thematic analysis identified six themes: (1) parental presence at ECRs is essential; (2) preparation is vital; (3) ECRs support complex decision-making; (4) videoconferencing worked well, although choice of format is important; (5) ECRs offer wider benefits; (6) the ECR process was generally smooth but could still be improved. Although this evaluation focused on videoconference ECRs during the pandemic, the findings remain relevant to current debates. Unlike Murdoch, we found that both parents and clinicians highly valued ECR and supported active participation by parents and, where possible, children and young people. However, we agree that clear guidance is needed to support patients' involvement in ethics processes, including preparation and support that promote inclusive, effective reviews.